Corruption Within Patient Advocacy Groups

ProPublica has discovered that the American Pain Foundation, ostensibly the independent voice of pain patients, is in fact largely a subsidiary of painkiller manufacturers. Predictably, APF says they are not influenced by having more than 90% of their budget coming from the pharmaceutical industry. One wonders then why they hid the relationship, given that it was of such putatively minimal consequence.

This is in many ways an old story. On many health-related public policy issues, some “patient advocacy groups” and “independent health experts” are creatures of commercial industry who mouth their patron’s line. Some of them are sincere in their views; others are just riding the gravy train. In either case, consider the advantage this gives the industry in political battles.

A Congressional Committee considering pharmaceutical industry regulation might convene a panel of witnesses that is intended to give a range of perspectives. First could be an official representative of the industry itself, second a member of a patient advocacy group which is covertly funded by the industry, third an Ivy League professor of medicine who has received enormous speaking fees from the industry, and last a law enforcement expert who has been consulting to the industry since she retired from the police. From the outside, it looks like all the relevant stakeholder happen to agree that no regulation is needed, but from the inside it’s a complete con. I’ve personally seen such shams work more than once, apparently without the knowledge of the legislators concerned.

There is no simple solution to this problem, but two ameliorative steps are possible. Every single time journalists get the perspective of a patient advocacy group or an individual health professional on a public health issue involving regulation of a corporate interest, they should ask the interviewee if they have ever taken money from that corporate interest. Likewise, after the witnesses have been sworn in, every Congressional and state legislature hearing should begin with the chairman saying “We are taking advice from each of you on the assumption that you each provide a unique perspective. I therefore begin by asking you to state for the record that you have never been in the pay of any other individual or organization represented on the panel today”.